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10/19/2008 06:42
Mommyof1
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Hi. I wanted to post because Ive felt bad every day this week at some point during the day and it has never happened everyday like this. It never feels the same but includes some if not all of the symptoms listed here:

-hot flashes/cold chills

-weakness throughout whole body

-fatigue

-shortness of breath

-headache(a pressure more than a pain)

-numbness/tingling going from hands up into arms but not shoulders.

-cold hands and feet..ive noticed they can be from white to purple or when cold but red only when they are warm

-nauseas

-feels like my heart is beating through my chest

-sunburn like rash looks very flushed. Its flat, no bumps etc like I said it resembles a sunburn and burning is accompanied usually in arms and face. I get it either on the cheeks and bridge of nose or also on my forehead and bottom part of face, ears, neck, arms and chest. The chest area seems to be more blotchy than the other areas and places like the neck arent as brightly colored. Its accompanied by a hot burning feeling and most of the time the hot flashes. I go from hot to cold.

-Joint pain either sharp or an ache which is usually in my legs(including knees and ankles), my wrists and arms and my hips and even lower back/lower stomach.

-I feel a burning hot feeling in my legs too it usually goes from my knees to my hips including the back and stomach areas.

-In general I feel like im sick without a fever. A normal temp for me is like 97.9 and the last time I felt bad it was 98.6 so idk if they consider that a low-grade or anything.

I just want to know if anyone else has felt this way...what does it sound like? I mean it comes and goes all the time. Sometimes I feel it and it will come out of nowhere and then go away a few hrs later. Sometimes it doesnt go away until I take a nap and/or some anti-inflammatories which seem to not be working like they used to a few weeks ago. I dont go see a rheumy until nov 12th and yesterday i felt crappy and it got me really depressed so i was just looking for someone who might be able to relate. Thanks so much! -Brit

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10/19/2008 09:11
karli1238
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I'm sorry you feel so bad. This past week has been horrible for me also. My joints have never hurt this bad. I can barely walk. I am seeing my rheumy on the 30th so I got pain pills from pcp until then. This morning it took 2 percs just to get out of bed and i still hurt. I think this may be my first flare. I haven't been diagnosed but have pos ana and anti dna. You are not alone. Are you on a cancelation list at dr so maybe they can get you in sooner? Or just bug your pcp like I did.
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10/19/2008 11:56
Mommyof1
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Well my pcp prescribed me 1 or 2 200 mg ibuprofen when I have the pain really bad. But I took 2 of those and an advil one day(the pain was already very bad by that point)and it dulled the pain to where it was bearable but did not get rid of it all. I think I will call and see if I can get in sooner but then again I dont want to make an appt and have it ruin my sons first halloween trick or treating(he was 6 months old last yr and was sick so he couldnt go). And my 21st bday is nov 7th. so im like ugh. i have been keeping a daily diary though of my symptoms so im hoping it will help. im sorry you feel so bad as well. Its horrible sometimes and i want to thank you because having someone to relate is comforting. I hope your day gets better and keep in touch if you like *hugs* -Brit

And no im not on any cancelation list that I know of. Thanks again.

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10/19/2008 14:36
mumeva
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I actually had a pretty tough week. I had the humming back in my head and had headaches on the right side where I had had brain hemorrhages and the tingling in my feet and hands-elbows arms and shoulders were horrendous so bad that its been keeping me awake all night. Yesterday afternoon while I was on the computer I had another disassociate seizure. It last just a few seconds but at that point I got the electrical charge that went through by head and I couldn't see for a few seconds. I am seeing my rheumy this coming Tuesday. I think that I need to switch some of the medications I am taking because I have been on them for at least 7 years and I believe that my body is getting used to them. Brit its good your keeping a diary of your symptoms my doctor likes me to do that as well. I sure pray that this coming week is better for you.

Eva

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10/20/2008 06:32
Mommyof1
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Hey girl. Im sorry you are feeling so bad as well. It sucks. I would def look at the meds your on and talk to your dr about it. I noticed my symptoms tend to come in late afternoon or at night. I feel fine in the mornings minus waking up stiff and sore each morning especially in my neck and shoulders/upper back. One time after drinking some alcohol the night before..a pretty good amount but I still remembered everything, I woke up with bad leg pain...needless to say I think after my 21st bday nov 7th I wont do that anymore..lol. It will be my last night out before my appt with the rheumy nov 12th. Anyway, I'm rambling, but to top it all off i'm due for that time of the month either today or tomorrow...whoopie lol. I hoep you all have a good week as well. take care of yourselves! *hugs* God Bless. -Brit
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10/20/2008 15:47
polivito
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Your list sounds very familiar! This year has been different for me - I usually have one or two significant flare ups a year but now I have gone 7 months straight with constant symptoms. New ones and more intense than ever. I always fit the disease into my life, but now am having to learn to fit my life into the disease. I am stressing out today because my long-awaited appointment with a new rheumy is this week and I am finding myself anxious. I feel like all my life, everytime I see a new doctor I have to 'prove' all over again that I have Lupus. And tests can be so misleading. Can anyone relate?
Paula

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10/20/2008 23:35
fibroforever
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To me, your list sounds familiar as well. And I'm sorry that you're experiencing all this. I would really try to get into the doctor again. Whether it's right away withe PCP or ASAP with the rheumy. Even call the rheumy's office and talk to the nurse. Often times, they will give suggestions for you, or talk with the doctor letting him/her know about what's going on with you and make some med changes, and/or get you in quicker.
"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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10/22/2008 14:04
Mommyof1
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Thank you for the input. I feel like calling them up and saying a whole lot lol but yesterday...which happened to be the start of my monthly, I felt a bit better. I didnt have all that mess except for fatigue and back ache. I took 2 naps though so maybe that kept me from feeling so crappy?! lol Today I am still just as tired. Havent had many symptoms except for joint pain and hot flashes...I also havent been out in the sun a whole lot the past two days so idk. Im so afraid I will not get a picture of my rash to take with me and/or I'll get to my appt and not have symptoms and seem like a total crazy person lol. Im glad there are those who can relate though. We are each others support groups Hope all is well as can be with each one of you and God Bless. -Brit
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